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Rob Long Of Uplifting Athletes: “There is no replacement for hard work and you never stop learning”

We’ve developed great relationships at the NFL level, and because of these relationships, we’ve been able to provide opportunities for rare disease patients and their families to spend time visiting NFL teams at their facilities. There was a family with a seven-year-old boy who has been dealing with a rare disease his entire life. The […]

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We’ve developed great relationships at the NFL level, and because of these relationships, we’ve been able to provide opportunities for rare disease patients and their families to spend time visiting NFL teams at their facilities. There was a family with a seven-year-old boy who has been dealing with a rare disease his entire life. The family is from Wyoming and they are huge Josh Allen fans, following him all the way back to his college days at the University of Wyoming. The family needed to relocate to Western New York to participate in a clinical trial for their son. We were able to set them up with an opportunity to spend the day with the Buffalo Bills and meet several Bills including Josh Allen. It was incredibly special.


As a part of my series about sports stars who are making a social impact, I had the pleasure of interviewing Rob Long, Executive Director, Uplifting Athletes.

A native of the Philadelphia suburbs and former All-American punter at Syracuse University, Rob Long has lived the rare disease journey. In December of 2010, late in his senior season, Rob was diagnosed with anaplastic astrocytoma, a rare and aggressive form of brain cancer. His prognosis at the time was grim, and if he was able to recover, his surgery and treatment would take more than a year. On a path to the NFL as a punter, Rob knew his road to the NFL just got unimaginably more difficult. Facing a future dramatically altered by his diagnosis, Rob first focused on fighting his rare brain cancer, though his chances were small. Once he conquered cancer — and he did — he blazed a new path that could connect his passion for football with his new goal of positively impacting the course for others like him diagnosed with a rare disease. And so he used the natural leadership skills that drove him to be named a two-time Syracuse Football team captain to become the second Executive Director of Uplifting Athletes, a nonprofit organization with the mission to raise much-needed funds for rare disease research and inspire hope in the Rare Disease Community. Today, Uplifting Athletes has grown to more than two dozen chapters at universities nationwide, led by football players who drive home the mission through the organization’s signature Lift For Life events in the off-season and Touchdown Pledge Drives during the season. And every spring, the Young Investigators Draft, a celebration that takes the form of the NFL draft, recognizes up-and-coming rare disease researchers across the country and awards them with research grants.


Thank you so much for joining us! Can you share your “backstory” and how it led to your current work?

My journey began when I was offered a full athletic scholarship to attend Syracuse University in 2007. It was an opportunity I could never have imagined. I was fortunate enough to earn the opportunity to start as a true freshman and went on to be named a freshman All-American after my first season. It was after that first season when I realized I had the potential to make a career out of playing football. I worked tirelessly to improve my craft, and in my junior and senior year, was named team captain. Heading into my senior year, I knew all I really needed to do was continue to develop and play within my abilities and I would have the opportunity to play in the NFL. Just five days after my last regular-season game, and Syracuse earning a bowl bid for the first time in over 5 years, my world was flipped upside down. On December 2, 2010, team doctors informed me that they had found a large growth in my brain. The next day, I was flown home to Philadelphia to be examined by one of the top neurosurgeons in the country and scheduled for emergency surgery. In a two-week span, I went from the top punter in the country coming out of the 2010 NFL Draft Class to being told that I likely only had 36 months to live and would need to battle a disease with a five-year survival rate of 15%. I was diagnosed with grade III anaplastic astrocytoma that took up about a quarter of my brain. After my diagnosis, I committed to myself two things: 1) I would not be defined by this disease and; 2) I would end my playing career on my terms, not those dictated by my diagnosis. What followed was 14 months of intensive treatment that drained me both physically and mentally. Fortunately, everything I learned from football trained me to persevere through what I can only hope is the hardest time of my life. I spent every day starting off with chemotherapy, followed by a trip to the hospital for radiation therapy. Afternoons were spent either at the gym or on the field trying to relearn skills I had spent the last seven years perfecting. After spending nearly two years working out for professional teams and at free-agent camps, I reached a point where I physically surpassed the highest skill level I’d reached before diagnosis. Unfortunately, there are only 32 NFL punter jobs and during the time I was receiving treatment, every one of those positions was filled. Life teaches us all how important timing is and for me, the timing never worked out. That said, I was at peace knowing that I was leaving the game on my terms and not because of my diagnosis. Most importantly, I realized I did not need football to be successful and that I could be successful in spite of not making it to the NFL. So, I pivoted and set out to fulfill my passion of giving back, to accept my unbelievable luck to still be alive, and to support folks dealt a similar hand with a rare disease diagnosis. In 2012, the Syracuse University football team started the Syracuse chapter of Uplifting Athletes in my honor. Through this initiative, I was able to share my story with the team and begin raising money for rare disease research, and awareness of those diagnosed and fighting. This felt like a calling that led me to reach out to the founder of Uplifting Athletes, Scott Shirley, who offered me a full-time position as the Director of Rare Disease Engagement. In October 2018, I was promoted to the role of Executive Director. My timing was finally right.

Can you share the funniest or most interesting story that occurred in the course of your career? What were the lessons or takeaways that you took out of that story?

In my junior year, alongside my punting and kickoff duties, I was also the holder for the team. We had a first-year coach in Doug Marrone, who was trying to restore a winning culture at his alma mater. We were playing Northwestern University, and for what felt like the first time since I arrived at Syracuse, we had a team that was ready to compete. Fast forward to the 4th quarter, I had just punted out of our own endzone and sent the ball back to Northwestern in a tie game with about 1:30 left to play. Two plays later, we intercepted the ball and we were in position to kick a game-winning field goal. Out of timeouts, we ran a couple of plays and then sent the field goal unit out onto the field. I was instructed to let the field goal attempt be the last play of the game. My coaches wanted me to run the clock down to six or seven seconds, then snap the ball so Northwestern wouldn’t have time to get the ball back. I kept an eye on the play clock and was waiting for it to wind down. It wasn’t until there was about six or seven seconds left on the play clock that I realized the game clock had less time left on it than the play clock. Fortunately, I was able to snap the ball with one second left on the game clock (four seconds left on the play clock) and made the kick to win the game. In addition to the importance of timing, a great lesson learned at that moment was the importance of paying attention to the details, or it can cost your team the game, whether on or off of the field.

What would you advise a young person who wants to emulate your success?

There is no replacement for hard work and you never stop learning, so look for the lessons. What I have learned on the job has been so beneficial to my development as a leader. There are things that just don’t come up in textbooks that you will inevitably have to handle and, when those times come, you must use the guiding principles that you rely on to make the right decisions.

Is there a person who made a profound impact on your life? Can you share a story?

I’ve been so lucky to be surrounded by so many great people in every phase of my life. However, I think the most important people who have shaped who I have become are my parents. The life lessons they instilled in me from a young age are what laid the foundation for my success in sports, business and life in general.

What are the “myths” that you would like to dispel about what it is like being a professional sports player?

Though I am not a professional football player, I think the biggest myths are around what it takes to reach the top level of any sport. There are so few professional athletes who rely on God-given talent alone. The time, effort and dedication required to become the best of the best is astronomical. I think in a world of social media, there is often a gross misconception that a couple hours in the gym here or there, or a few hours of working on drills, is all it takes to become elite, and the rest of the time is filled with partying, fast cars and big paychecks. So many of the individuals who make it to the top are surely more talented than the average Joe walking down the street, but they dug deep to find a work ethic, determination and sacrifice that most could not imagine.

Ok super. Let’s now move to the main part of our discussion. How have you used your success to bring goodness to the world? Can you share with us the meaningful or exciting causes you are working on right now?

After my diagnosis, I realized the only reason I was still alive was because there were so many people who had spent countless hours raising millions of dollars to support and fund research. It was these folks who ultimately gave me the opportunity to survive and spend more time with the people I love. Today, it is my mission to provide those same opportunities to others praying for more time with their loved ones. One in 10 Americans will be diagnosed with a rare disease in their lifetime, and 50% of those affected are children. But because each rare disease affects fewer than 200,000 individuals at any given time, there is limited research conducted. One of our key initiatives at Uplifting Athletes that I am most proud of is our annual Young investigator Draft. This program is modeled on the NFL draft, but rather than focusing on the selection of top athletes, it recognizes the country’s top rare disease researchers, and provides funding for their vital work in the form of grants. Current NFL athletes who are collegiate Uplifting Athletes alumni, and current college players, all take part in the annual draft event. We are so grateful to those college athletes, and those who have graduated to careers in the NFL, for taking their personal time to support this effort and other Uplifting Athletes initiatives throughout the year. Today, in large part to their commitment, Uplifting Athletes has raised 5 million dollars to support the mission of the organization and its programs.

What methods are you using to most effectively share your cause with the world?

Sports and athletes in this country have one of the most powerful platforms available. We want to help athletes realize the platform they have and help them utilize that platform for good. Led by former elite athletes, Uplifting Athletes is proud to provide an opportunity for student-athletes to enhance the valuable skills developed on the college football playing field and transition their experiences into the leadership skills necessary for successful careers after athletics. We currently work with a network of 23 Division I football programs and dozens of NFL athletes who we recognize as Uplifting Ambassadors. Our Ambassadors are committed to utilizing the powerful platform of football to inspire the rare disease community.

Can you share with us the story behind why you chose to take up this particular cause?

While I was diagnosed with a rare form of cancer, it wasn’t until I really started to meet other patients in the rare disease community that I realized how regardless of our diagnosis, our journeys were similar. The more I learned about this community and the critical need to fund rare disease research, the more my drive grew to bring national attention to the 30 million Americans who comprise this community, and the importance of finding therapies for the more than 7,000 known rare diseases.

Can you share with us a story about a person who was impacted by your cause?

We’ve developed great relationships at the NFL level, and because of these relationships, we’ve been able to provide opportunities for rare disease patients and their families to spend time visiting NFL teams at their facilities. There was a family with a seven-year-old boy who has been dealing with a rare disease his entire life. The family is from Wyoming and they are huge Josh Allen fans, following him all the way back to his college days at the University of Wyoming. The family needed to relocate to Western New York to participate in a clinical trial for their son. We were able to set them up with an opportunity to spend the day with the Buffalo Bills and meet several Bills including Josh Allen. It was incredibly special.

You are a person of enormous influence. If you could start a movement that would bring the most amount of good to the most amount of people, what would that be? You never know what your idea can trigger. 🙂

Rather than being an enormous influence, I work to gather those with enormous influence to use their platform for good. If I could start an empathy movement, I’d do that. People are so much more alike than we are different. Regardless of where we were born, what we look like, what language we speak, at the end of the day we all are human. Each of us has our own struggles and challenges and stuff to deal with, and you never know what someone else is going through. If we could have empathy for each other and care more about each other, and we’d all be much better for it.

Can you please give us your favorite “Life Lesson Quote”? Can you explain how that was relevant in your life?

The most meaningful to me is the Serenity Prayer, “God, grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference.” In my current role, I come across a lot of people and stories that hit close to home, and so much that I want to be able to change or fix. But I know that, ultimately, I need to understand where my strengths and resources lie. Understanding how I can apply my experiences and talents to have the most impact is really powerful, and I’m very grateful for the platform I’ve been given.

We are very blessed that some of the biggest names in Business, VC funding, Politics, Sports, and Entertainment read this column. Is there a person in the world, or in the US, whom you would love to have a private breakfast or lunch with, and why? He or she might just see this if we tag them 🙂

I would love to meet the researchers who worked on the therapy I took during my treatment and let them see where I am now. Since I have no idea who those individuals are, I would love to sit down with Ken Frazier, CEO of Merck Pharmaceuticals, the company that developed the treatment.

How can our readers follow you online?

On Twitter @UpliftingAth and on Facebook and Instagram @upliftingathletes

Thank you so much for these amazing insights. This was so inspiring.

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